Northern Ireland Information Day – connecting our community

On Thursday 5 October we successfully hosted an in-person information day for adults living with muscle wasting and weakening conditions in Northern Ireland. 

This free event, at the T3 Conference Centre, Lisburn, provided practical information and support for people living with a muscle wasting and weakening condition and provided an opportunity for them to meet with other people within the community. 

The participants heard from a range of speakers including: 

  • Sarah Mason, Neuromuscular Clinical Nurse 
  • Siobhan Lamb, Physiotherapist 
  • Terry Conroy, Disability Sports Northern Ireland 
  • Immeasurable Minds ran a mindful session 

Rob Burley, Director of Campaigns, Care & Support shared information about the recent research grants we’ve awarded, including one at Ulster University. The project led by Dr Stephanie Duguez aims to improve the diagnosis and measuring of the progression of neuromuscular conditions, such as spinal muscular atrophy.  

A personal touch  

Claire O’Hanlon, MBE, Chair of the Muscular Dystrophy UK Northern Ireland Council, and a peer support volunteer, hosted the day.  

Claire’s son Luke was diagnosed with Duchenne muscular dystrophy in 2012 aged 13 months. The family from Dungannon, work tirelessly to fundraise to support vital research and campaign to make a difference.  

Claire spoke about her own family's experience, she said:

It was a delight to host a Muscular Dystrophy UK Information Day in Northern Ireland. There was a real sense of community, as people could discuss their own personal experiences in a safe environment. 

When Luke was first diagnosed, Muscular Dystrophy UK helped to guide me and my family through a challenging situation. Coming together is vital in sharing knowledge and expertise to help gain a better understanding.

Thoughts from the day  

The day organised by our Care, Campaigns and Support team received some positive feedback. 

Thank you Lesley for bringing us all together. This was my first time at one of these events – 100% beneficial! It was great to have the opportunity to meet others experiencing similar difficulties. It definitely made me feel part of a community, knowing about the support in place for our conditions.  

Very informative day and heartening to hear about all the work that’s going on. Great opportunity to learn and spend time with others who understand the challenges.  

First class day in terms of organisation and delivery. Informative and practical. Presenters very professional and warm and open. Very approachable. Down time seating in lobby perfect as it encouraged us to chat and share with each other. Sincere thank you to everybody.  

Coming to a town near you  

The information day is part of a series of events happening across the UK. Upcoming events will be happening in Stirling, Scotland, 23 March 2024, Birmingham, West Midlands and Wales.